For Caregivers. 'How did it start?'

Here's a little more of my journey and resources for you.

Hello, dear Readers! Thank you for being here.

The November Series: For the Caregivers

The first article of this month’s series highlighted President Biden’s proclamation that this month is National Family Caregiver Month and Madam Vice President Kamal Harris's experience as a caregiver. She knows and understands. She cared for her mother, who was diagnosed with cancer.

How did your caregiving journey start? Or are you finding that you’re doing a little more for a loved one? A little shopping, perhaps? Perhaps you’ve offered to help someone about to have an operation?

For former caregivers or long-term carers like myself, in hindsight, there is a crisis tipping point or period that sets the rollercoaster in motion. In some instances, there is only a heart-in-throat free fall when someone needs an ambulance.

Care to share a piece of your caregiving rollercoaster? ‘How did it start’?

Today’s contents:

• My First Rollercoaster-ing

• The individuality of each Carer’s Rollercoaster

• Resources: iCARE Stack section & Index For the Caregiver

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My First Rollercoaster-ing

If you’ve been reading Carer Mentor for a while, you may have noticed that the introduction has evolved to share more details of my caregiving journey with each article.

I need the time… to space and release the details of the numerous events gently.

Finding the words can be like removing the scab on a wound—uncertain if the skin underneath has healed, if it’s still raw and how much pain will be released. Of course, everything feels sensitive and exposed if you’re tired. (Thanks, Covid & pneumonia!)

I shared the crisis tipping point of my caregiving journey in A Prelude to Caregiving: Love and Torture. A 2015 hospitalisation was only the beginning'.

After I published that piece of my rollercoaster, I had the worst Grief Hangover that lasted several days! Now, I realise that, for my mental health—and to continue my everyday caregiving, I can only share the past in small pieces.

I guess that’s an essential insight in itself. As I wrote in ‘Can’t Cry, Want to Cry?’

We may not have the space and time to fully process emotions and events while being flung around the rollercoaster, orchestrating appointments, communications and caregiving.

But also, it isn’t easy to download or share the full amplitude of feelings and everything we go through when we have time and space.

And then there’s—with whom and how?

It takes a special kind of chosen family friend to empathetically listen without caresplaining.¹

Willingly and empathetically accepting the full brunt of the rollercoaster-ing emotions is a special kind of gift..and dare I say, skill. THIS is one of the most precious gifts to a caregiver—quality time, space and heartfelt, meaningful connection—openness to receive without question or statement—accepting the words without necessarily understanding it all. Being present. Not solving, sound boarding.

How do I know this? I’m blessed with chosen family friends who have become experts at this. They rode parts of the rollercoaster with me in the cart, stopping me from falling out or catching me before I could fall further.

And yet, even with them, I’m still sensitive about transmitting the dark-grief cloud onto their plate.

I think we’ve evolved an unspoken friend rule, a commitment to tell each other if something is very wrong and whether we need suggestions/advice or not. Ahhh, we’ve developed a ‘checks and red flags’ system with mutual accountability irrespective of our burdens BUT we’re not trying to balance the books. Less accounting of actions and more feeling of the quality and meaning. After all, friendship is a journey of meaningful connection, another form of caregiving.

Can you empathetically sit in pain with a caregiver without trying to fix things or ask them to explain what they’re going through?

My advice is to take your cue from the caregiver. If a caregiver starts sharing…think about how much of an honour it must be—you are among the chosen few! The choice is not made lightly.

A summary of my caregiving rollercoaster: After a career climbing the corporate ladder, I made a head-heart-gut-aligned decision to help my Mum care for my Dad. He had a litany of health issues that were destabilised by a major hospitalisation in 2015. Congestive heart failure and rheumatoid arthritis were destabilised, and Dad was diagnosed with vascular dementia after the hospitalisation. (Read a Prelude to Caregiving for more details).

Early in 2016, Dad started to pee rosé and was diagnosed with bladder cancer. Exacerbating his existing unstable health issues and tipping the rollercoaster into another loop-the-loop. He had his first bladder transection operation, and over the following year, the plateaus of the stable-calm routine became shorter and shorter.

I stepped away from work for the maximum time I could take—from November 2015 to 2016. I rode the rollercoaster of caregiving, stretched my emotional capabilities beyond what I thought was possible, and tried to decipher what to do next. Fear and adrenalin are potent stimuli.

I returned for six months and then, after much flip-flopping, resigned from the ‘big’ corporate job in 2017.

From June 1st, 2017, my number one priority became my parents. The head-heart-gut decision was made. (Click the link to read the poem that affirmed my decision and became my new anchor). Then, living the choice started.

Corporate to Carer was not an easy path to walk, when I felt like I’d been flying high. But, as I repeatedly had to remind my parents, ‘I’m grateful and feel blessed, because out of this painful twist of circumstance, I was ’Liberated of career chains, and life’s conditioned state’; I was painfully awake.

Excerpt from ‘Head-Heart-Gut Aligned’ By Victoria

When the world comes knocking on your door, cracking you to attention
Avoid the paranoid thoughts, fears linked to past-contexts, expectations and perceptions 
Open that door with excited anticipation...comforted by all you’ve learnt, & what's emerging 
You’re Liberated of career chains, and life’s conditioned state
you're already armed, primed for this - 
so 'GO On, escape!

Dad passed in January 2020. Shortly after his funeral, we moved to another rollercoaster— treatment for Mum’s cancer.

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The individuality of each Carer’s Rollercoaster

Every rollercoaster is different because every human is different.

The only constant was knowing that nothing was within my control and everything was unpredictable.

Humaning is hard to accept when you realise how much suffering is involved—suffering that’s not only about how you manage to navigate yourself through it. But also about how you have to watch loved ones suffer. Humaning hurts.

My saving grace has been my nerdy curiosity to try and figure myself out, my reading and research to discover fresh insights, and my thirst to explore and learn from others, academics and those with lived experience. Connecting and talking while rollercoaster-ing is a must-do!²³

These are some of the questions that I wrote when we were caring for Dad:

• Why? Why do I feel this way?

• How do others manage, navigate, and get through this?

• This is not about grit and grind; it’s not only about resilience. There’s so much more. We need to find a way to be proactive and prepare ourselves!

• How do people sustain themselves and their identity beyond being carer?

• How can we help ourselves more? How can we struggle less so that we’re not working against ourselves, compounding our emotions with worry about our emotions…. when there’s already so much we have to deal with?

Do these resonate with your questions at the start of your caregiving rollercoaster?

What other questions did you have or do you have now?

I’ll share thoughts about these questions and more about caregiving this month… when I have more energy and sleep!

You can read more about why I write and publish Carer Mentor here.

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Resources: iCARE Stack section & Index For the Caregiver

The first-anniversary goal was this new iCARE section. The aim was to have a go-to section where readers could find empathy and inspiration, resonance with their experience and new connections.

Click the button to explore the different indexes and anthologies

Index: For The Caregiver.

This index for the Caregiver offers the information, research, and insights I’ve discovered and will grow.

The Caregiver’s toolbox leverages the research of experts like Dr Susan David, who wrote ‘Emotional Agility: Get Unstuck, Embrace Change, and Thrive in Work and Life’.

How did your rollercoaster start?

If you have an article/poem or other contribution you’d like to share with other caregivers, please let me know in the comments. I welcome all contributions. Every experience offers new insights into being a carer.

Please subscribe and ‘❤️’ LIKE to guide others to these resources.

1. Caresplaining is the term I use to help others understand that, like Mansplaining, carers do not appreciate being told, advised or explained how to care for their loved one. Unlike mansplaining, everyone may be well-intentioned, but the effect and impact are the same. We still need to qualify/explain/justify why we wouldn’t apply the advice or ‘solution’.

It’s better to presume that the care routine/approach has been carefully evolved, with tiny incremental improvements that could be accommodated, accepted and aligned with the wishes of the person receiving the care.

Caregiving is about safely tending to someone's needs and wishes, constantly balancing risks and benefits, and assessing those needs versus wants. So, an opinion without context, especially with an expectation of praise/hero-ing, will not be lauded as a gift but more as a demerit on the empathy scale.

2. Useful links for advice, info and ideas

3. Carer Forums are a great way to connect with people who know. I highly recommend the Carers UK Forum because there is a great mix of people who offer insights, advice and tons of empathy.